My good friend Barbara Farlow sent me a link to a talk from TEDx SFU. At first I thought that was a txt term for not speaking, but them I realized there was a letter missing, I was thinking of ‘STFU’. Then after watching the talk, where a well-known broadcaster recounts her experiences with a diagosis of Down syndrome, it I thought maybe it really is, or should be, “shut the f*** up!” at least when referring to how parents are informed about the diagnosis of Down syndrome. More supportive and positive information, and fewer expressions of sympathy for the “terrible” diagnosis, are certainly needed. Please don’t say “I am so sorry for you”; do say “what a beautiful baby”, and if you can’t bring yourself to say that, then STFU.

(Actually it turns out that SFU is Simon Fraser University, which is a University in Vancouver BC)

One of the things that Tamara Taggart says, in the video, echoes what Annie and I have been saying about antenatal counselling for extreme prematurity. The counselling recommendations of professional societies require that we give a list of all the terrible things that can happen to a micro-premie. None of those statements encourages a balanced conversation, with the positive things that can come from having an extremely preterm baby, the positive things in their lives, and the lives of their families.

Tamara Taggart contrasts the approach of the well-meaning but frequently negative personnel who dealt with her and her son in the first years of his life to the overwhelmingly positive approach to her diagnosis of a very aggressive cancer. An interesting and illuminating contrast.

3 Responses to SFU !

Not only are we very biased about the quality of life of families of preterm infants, we also allow that bias to influence our counseling. Parents often receive informed consent for initiating care of extreme preterm infants based on faulty data. Population data, rather than intention to treat data, is often presented to parents. We also often present potential morbidity as uniformly worse than death. The comparison of preterm infant care to cancer care is also interesting. I appreciate the perspective that this article brings to my practice.